Idiopathic anaphylaxis

[woosey35]

Dd has had anaphylaxis for a few years. She’s had 11 attacks in the last 9 weeks. All needing adrenaline!
She’s no longer able to go to school and has varying degrees of an attack most days.

I just don’t know which way to turn. There doesn’t seem to be any support out there. I’ve tried the anaphylaxis campaign etc but all seem to be pretty much directed to specific food allergies for example.
Dd’s Cause is her immune system has completely gone mental. She’s going to be starting immune suppressants soon.
Can anyone relate?

Hi woo

So sorry your family is going through a stressful and worrying time with your DD.

Has any doc mentioned mast cell activation disorder/syndrome?

Have a look at this site www.mastattack.org

Also worth looking into low histamine diets and daosin.

Mast cell disease is more common in people who have a family history of hypermobility, autism, Pots, allergies, hay fever etc.

Hope this helps! Your not alone dealing with this, the allergy campaigns don't really address it-it's beyond frustrating.

Neeneefrog - thanks so much for your reply.

We’ve asked the consultant if it’s mast cell activation syndrome. He said it’s not helpful to label it with that currently. I think they feel they still haven’t got to the bottom of it all and by labelling almost shuts the door on diagnostics. Her consultant is excellent and is continually chipping away to find a definitive diagnosis. Because she’s on such high oral steroids daily currently, it’s masking a lot in terms of results from blood tests etc.
I will definitely look into the histamine diet.

Thanks again for your reply. It means a lot

Morning

My loved one with mast cell disease is also without a label of mcas. She tested positive for environmental allergies which allowed the doc to jusify the use of mast cell stablisers but she has random reactions and triggers which aren't allergies. We could have pursued the tests for a definitive diagnosis but given how poorly she was if she could have access to the meds anyway we thought we'd better go for it. And as you know already once your medicated you can't be tested so she's a mystery.

The low histamine diet isn't for everyone but defo worth having a look at particular if your DD is reactive to some degree everyday. There's an enzyme in your digestive system DAO which deals with histamine in food. Some people from birth don't produce enough DAO. There is a blood test available to check the levels but not sure if its avilable on the nhs. Sometimes the low histamine diet is used anyway even if the levels are okay because there is an overwelming level of histamine being manufactured in the body so if you can aviod more its best to.
The diet sheet is available on the allergyuk site. If your DD isn't reactive to any drugs or supplements i would consider ordering Daosin to be taken before eating. Obviously if she has had previous reactions to supplements or meds check with your consultant first.

Has anyone spoken to you about mast cell triggers that are basically really f'ing strange? There's a list of 10 I think, includes tempreture change, hormones (puberty, ovulation, menopause etc), air pressure changes (flying), exercise intolerance, stress, pain, infections, allergies/known triggers (obvs!). Not every mast cell patient reacts to the whole list but some do.

You and your daughter are being very brave and she's lucky to have a mum who is on the ball.

Apologies if this is an essay to get through

Crikey wow. So grateful thank you ☺️

My dd is already on a couple of mast cell stabilisers. They work for a couple of months then just stop. It’s really weird.
As for the mast cell triggers, she basically kicks off to all of them. But the added complication is that she also has adrenal insufficiency. So basically doesn’t produce any cortisol. Cortisol is the stress hormone, so if she encounters any stresses (basically the same kind as the mast cell triggers), she struggles with her adrenals. We try and keep her as stable as we can regarding temperature, emotion etc. It’s bloody tough!!
She’s under one of the country’s top immunologists. We travel 6 hours each way to see him. I just wish there was a magic potion. I’m hoping the immune suppressants will be the key.

Thanks so much again for your kind empathetic words.

Hmmm who are you seeing? We might be seeing the same immuneologist - Professor Seneviratne? I adore the man. I'm highly biased as he was the first Dr to take every symptom seriously, understand the bigger picture, work at an even pace to try and avoid further triggering. He is pure gold and possibly needs to be cloned so he is in every city
Had a run in with a local dermatologist last month who said he understood and then demonstrated he had no clue had to intervene after my fam member fell unconcious. Made us appreciate the immuneologist even more.

I think you need to give yourselves a massive pat on the back! You are all coping with so much and even attempting to remain in the pefectly stable calm Zen mode is amazing. And who can remain calm when faced with anaphylaxis? Its a very isolating situation to be in you are a super hero family. It's very easy for drs to sit in an office and say avoid or reduce triggers but the reality of it is a bit different!

Not sure how old your DD is but have you found the blog hells bells and mast cells? The blogger is in her 20s I think and she writes quite funny relateable posts. Plus there is a gift list which can be forwarded on to family and friends which helps answer the "what can i get the person who is reactive?"

Neenee I’ve pm’d you

my son went through something similar as a teen, had idiopathic angioedema.
took about 6 months to get it diagnosed. had referral to two different London hospitals with experts that collaborated to get to a diagnosis and medication.

was initially told was not likely to become anaphylaxis but it did in the end.
but drugs got some control of it, as did time.

had impact on his GCSEs due to being unable to go to school or when he did I had to pick him up as he was having a reaction.

a combo of stress or viral infection , like a cold would trigger reaction.

hormones also have impact and by time he was late teen it burnt out as medical peeps told us.

now recovered well, went to college and finished his education despite needing 2 major operations for something not related to his angioedema.

so keep up the hope that you find a answer that works quickly for your daughter and don't give up hope that things will get better.

Can’teatcustard - sorry your son has been through this too. It’s really hard isn’t it. Can I ask you what meds they gave your son to stabilise him??

Dd hasn’t been at school for a couple of months as they won’t have her due to the risk. Most days she goes they end up having to give her adrenaline and she ends up in hosp overnight. She then has a couple of days off and the cycle starts again. She’s similar at home too. She’s also had reactions while convalescing in hospital!

When you say he’s now recovered.....do you mean actually properly recovered? Or controlled??
Dd’s Consultant said dd won’t get better but it’s about gaining control.

It’s just such a worry.

I think the medication will be different for each type or case, and certainly my sons was controlled for some time.
They said it may 'burn out' in his case, and so far nothing for the last 2yrs. He is 22yrs now.